ethics

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Opponents and supporters of an abortion bill hold signs outside the Texas Capitol July 9 in Austin. (Eric Gay/AP)

Abortion can be hard for the patient. But it can also cause turmoil for the doctor performing the procedure.

Janet Singer, a nurse midwife on the faculty of Brown University’s obstetrics-gynecology residency program, found herself acting as a confidant in many discussions with residents about abortion.

“Over the years, when a resident felt confused, overwhelmed or thrilled about something to do with abortion care, they often came to me to discuss it,” she says.

Tricky questions continued to arise: Where does life actually begin? How do doctors’ personal beliefs play out in their clinical care? And, what’s really best for mothers?

(KateLMills/Flickr)

Singer thought the general public would benefit from hearing more about the complexities of the young doctors’ experiences. So she asked four residents to write about their feelings about abortion training and services, or as one resident characterized it: “one of the most life-changing interventions we can offer.”

These personal stories are published in the July issue of the Journal of Obstetrics and Gynecology, headlined: “Four Residents’ Narratives on Abortion Training: A Residency Climate of Reflection, Support, and Mutual Respect.”

I asked Singer to offer a bit more background on the project, and here, edited, is her response, followed by some excerpts from the residents’ narratives:

Janet Singer: The abortion debate in the U.S. is so divisive, making everything seem black and white; but the real life experiences of doctors and women are much more complex. I am a nurse midwife and though personally committed to increasing access to abortion services, I believe that abortion is not a black and white issue. I speak openly about my personal beliefs with the obstetric residents I work with.

My thinking about the grey areas surrounding abortion care are the result of many conversations with colleagues and residents. One came to me overwhelmed on a day when she had done a late-term abortion and then been called to an emergency C-section for a fetus/baby just a week further along.

She needed to talk about how overwhelming it felt to try to decide where the cusp of life was, why it was OK to take one fetus/baby out of the womb so it wouldn’t live and one out so it might. Continue reading →

Boston University bio-ethicist George Annas discusses the ethical issues raised by new gene-editing tools that may eventually allow humankind to control its own genetic legacy. (Courtesy)

The powerful new gene-editing tool CRISPR is sparking excitement in biology labs — but also calls for a broad discussion about limits, and whether we should ever meddle with the human gene pool. I asked Boston University bio-ethicist Prof. George Annas for his take. Our conversation, edited:

CG: So scientists are saying we should start talking about using CRISPR to alter the human gene pool. What would a conversation like that even sound like?

GA: The conversation is not about CRISPR per se. It’s about: Now that we have techniques to edit the human genome, should we edit the human genome, and if so, for what purposes?

We’ve had this conversation around cloning in the mid-1990s. Most but not all scientists, and almost everyone in the public, agreed we should not try to clone a human being, use our genetic knowledge to make a genetic duplicate human being. And we’ve had very good luck: it’s turned out not to be possible to clone a human being. At least, we don’t know how to do it yet.

But with CRISPR, it seems much more likely that sometime in the not-too-distant future — though it may be decades, this gene editing technology will be dependable enough that someone is likely to try to use it on a human embryo.

This will be a big and dangerous step—dangerous for sure to the resulting child. Many people have no trouble with using genome editing on animals and plants, so long as you’re not harming the animal in a way that makes it suffer. But children do suffer. So the first question is: Should we ever try to edit the genomes of human embryos that are destined to become children? I think the answer is no.

I agree with the scientists who say that it’s definitely not safe to do it now because we can’t predict what other things CRISPR will do to the rest of the genome. We know very little about the genome, and what impact taking out one or a series of base pairs — with CRISPR, you can take a series out — is going to do to the rest of the genome, and hence to the whole organism as it develops.

And the problem with germ-line genetic engineering at the level of the embryo —

— Making genetic changes that will be passed on forever —

Potentially, yes. First they will be passed on to this baby, and this baby will become an adult. And if this “engineered” baby has children, the new traits will be passed on to the next generation, and so on.

So an initial question — and scientists agree with this — is, how many generations do you need to prove that a particular method of genome editing is safe? I would guess most scientists would say, at least four or five. Well, we can do four or five generations in zebrafish or in rats or in fruit flies pretty quickly.. In humans, however, it’s going to take you probably 100 years. So, how many children would you want to follow, and their offspring, for 100 years before you are ready to conclude that editing the human genome is safe for children?

That strikes me as a question that we can’t answer. Because we cannot prove it safe without putting human children at terrible risk of harm, we can’t subject any human child to this experiment. That’s because children can’t consent, and their consent is necessary as a matter of ethics because there are good reasons to anticipate that something will go horribly wrong.

And more broadly, there are potential implications for the whole human race, if we start engineering evolution — ?Continue reading →

August 14, 2013 | 3:12 PM | Sascha Garrey

A story broke Monday that Anthony Stokes – a teenager in Georgia, given six months to live on account of his dire heart condition — was denied a place on a heart transplant list due to his history of “non-compliance,” that is, not following medical orders. (Anthony’s family said the real reason they believe their child was denied a spot was due to “low grades and trouble with the law” according to an ABC news report.)

Either way, though it was announced today by Stokes’ family that their son will now be placed on the transplant list, this controversy raises important questions: should bad behavior block a patient’s acces to the list?

While it may seem harsh to deny a child a spot on the heart transplant list because of past transgressions, George Annas, Chair of the Department of Health Law and Bioethics at Boston University, says a patient’s ability to follow post-transplant medical advice is an important screening criterion.

“There are not enough hearts for everyone,” he says. “When someone gets a heart transplant that means there is someone who does not get one. Continue reading →

Caplan, the founding head of the Division of Bioethics at New York University Langone Medical Center, argues that parents who veto vaccinations should be held legally responsible to any party that gets sick because of that decision.

Now, as anyone who has ever written about vaccines and parenting knows, when you touch on these topics, the comments can get pretty emotional.

Here’s Paloma Smith:

…stop looking for excuses for your reckless behavior. Your child should be vaccinated, period. That is why diseases in this country are much less of a concern than in third-world countries. Continue reading →

December 14, 2012 | 8:59 AM |

When the U.S. Supreme Court ultimately issues a ruling on gay marriage, it will clearly have huge legal and historic implications. As Emily Bazelon at Slate put it, “This is it: The civil rights issue of our generation, in the hands of nine justices.”

A couple marries in Seattle earlier this month. (dbvictoria36/flickr)

But on a more intimate level, the ruling could also have a major effect on the mental health of gay and lesbian couples across the nation.

History rarely crafts natural experiments for studying topics as broad as the relationship between the law and mental health, but the mid-term elections in 2006 provided just that opportunity. With that election, eight states passed constitutional amendments banning the recognition of same-sex marriage, and psychological scientists were watching.

In one study, a national sample of over 1,500 lesbian, gay, and bisexual people completed measures of their mental health six months prior to the election and then again in the month following the election. With this large sample, the researchers were able to compare the mental health of people living in states where constitutional amendments passed (Alabama, Colorado, Idaho, South Carolina, South Dakota, Tennessee, Virginia, and Wisconsin) with those living in states that have no such amendment, or had one prior to 2006.

In states that passed constitutional amendments banning same-sex marriage, lesbians, gays and bisexuals suffered. They reported increased psychological distress in the month after the election, compared to six months before the election, and worse distress compared to gays, lesbians and bisexuals living in states where there were no such amendments on the ballot. “I mean, if that is not dehumanizing, then I don’t know what is…It does make [gay, lesbians, bisexual] people feel like second-class citizens or less than human,” said one participant.

In states that passed constitutional amendments banning same-sex marriage, lesbians, gays and bisexuals suffered. They reported increased psychological distress in the month after the election.

The researchers showed that these differences were not due to any systematic pre-existing differences between participants.
In a follow-up study, the researchers found that the passage of these constitutional amendments also impacted the family members of gay and bisexual individuals in similar ways, suggesting that the psychological effects of such legal decisions ripple far beyond those immediately impacted. “When anti-gay marriage amendments are passed, it robs our son of that view of normalcy in relationships. I grieve for him,” said a 54-year old mother of a gay son. Continue reading →

For some excellent context and more backstory on the American Academy of Pediatrics’ new recommendations on circumcision, listen to Radio Boston today featuring the very knowledgeable Marvin Wang, co-director of the newborn nurseries at MassGeneral Hospital for Children. (As for his credentials, when asked how many circumcisions he’s done, Dr. Wang said he stopped counting after the first thousand.)

The AAP on Monday updated its 1999 circumcision policy statement (which said the data weren’t sufficient to recommend routine neonatal circumcision) and now asserts that the health benefits of newborn male circumcision outweigh the risks and insurers should cover the procedure. However, the influential pediatrician’s group stopped short of recommending universal circumcision for all baby boys and said the ultimate decision should be left to parents.

Wang says that much of the push for the new AAP recommendations came from clinical studies in sub-Saharan Africa that showed male circumcision reduces the risk of heterosexually acquired HIV infection in men by approximately 60%. Wang also put circumcision in a global context, noting that while the rate of hospital circumcision in the U.S. has dropped from about 79 percent two decades ago to about 55 percent today, in the U.K only about 9 percent of men are circumcised. Continue reading →

When I was ten, my parents sat me down on the edge of their bed and told me I had to go back to the hospital. I had already been to two in the Boston area; one of which I had defiantly walked out of after the radiology nurse, unable to find my vein, had made a black and blue mess of my arm. But I wasn’t going there; I was going to the other one, Boston Children’s Hospital.

My parents never used the words “sick” or “cancer” or the even scarier terms like “neuroblastoma” and “stage four” in that first conversation. My only question was: Would I have to stay overnight? Our discussion was short and simple. But was it enough? Would explaining the situation to me — really explaining it — have done any good? Or would it, maybe, have done more harm? Did I, at ten years old, have the maturity to understand what was truly happening to me, or what was really at stake?

I don’t know. But fourteen years later, I’ve done a lot of thinking about it.

I know that my parents did the best they could to explain things and to include me in the medical decisions that they felt I could handle. I also know that it was always hard. Recently, I spoke to Dr. Steven Joffe, a pediatric oncologist at Dana Farber/Children’s Hospital Boston and chair of the Children’s Oncology Group Bioethics Committee, about how involved children should be in there own medical care. Dr. Joffee was also my primary oncologist as a kid and I still see him for check ups every year or so. Continue reading →

USA Today reports on a bizarre policy inequity for women who give birth abroad. Apparently, the children of American women who conceive through IVF are not considered U.S. citizens unless the egg or sperm donor involved is an American citizen.

Read the story of Chicago native Ellie Lavi who gave birth to twin girls in Israel — and observe your blood pressure rising:

She found that the U.S. State Department did not share in her joy when she went to the U.S. Embassy in Tel Aviv to apply for citizenship for her children.

An embassy staffer wanted to know whether Lavi got pregnant at a fertility clinic. She said yes and was told that her children were not eligible for citizenship unless she could prove that the egg or sperm used to create the embryo was from an American citizen.

“I was humiliated and horrified,” Lavi said. “We’re talking about the children I gave birth to. Of course they’re my children.”

The incident points out what critics say is a glaring inequity in U.S. citizenship regulations. Continue reading →

A new analysis by researchers at Harvard and Tufts makes a disconcerting point: The revised Diagnostic and Statistical Manual of Mental Disorders (aka, the DSM, the internationally recognized guide to classifying mental health disorders produced by the American Psychiatric Association) is riddled with conflicts of interest. And, the researchers say, this latest edition of the DSM is no better than the previous one when it comes to members’ financial conflicts.

Lisa Cosgrove of Harvard and the University of Massachusetts and Sheldon Krimsky of Tufts University write in this week’s PloS Medicine that a new disclosure policy has not led to an overall reduction in financial conflicts among the DSM-5 members:

Currently, 69% of the DSM-5 task force members report having ties to the pharmaceutical industry. This represents a relative increase of 21% over the proportion of DSM-IV task force members with such ties (57% of DSM-IV task force members had ties). This finding is congruent with emerging data from fields outside of psychiatry suggesting that transparency of funding source alone is an insufficient solution for eliminating bias…

There are 141 panel members on the 13 DSM-5 panels and 29 task force members. The members of these 13 panels are responsible for revisions to diagnostic categories and for inclusion of new disorders within a diagnostic category.

Three-fourths of the work groups continue to have a majority of their members with financial ties to the pharmaceutical industry. It is also noteworthy that, as with the DSM-IV, the most conflicted panels are those for which pharmacological treatment is the first-line intervention. For example, 67% (N = 12) of the panel for Mood Disorders, 83% (N = 12) of the panel for Psychotic Disorders, and 100% (N = 7) of the Sleep/Wake Disorders (which now includes “Restless Leg Syndrome”) have ties to the pharmaceutical companies that manufacture the medications used to treat these disorders or to companies that service the pharmaceutical industry.

Comparison of financial conflicts of interest among DSM-IV and DSM-5 task force and work group members. (Cosgrove and Krimsky 2012, PLoS Medicine, doi:10.1371/journal.pmed.1001190)

According to a just-published survey of more than 1,800 practicing physicians, a good chunk of doctors aren’t telling the full truth about various aspects of your medical care.

Specifically, about one-third of the survey respondents didn’t completely agree with disclosing serious medical errors to patients because they feared a malpractice case; two-fifths did not completely agree that they should disclose their financial relationships with drug companies to patients; and over one-tenth said in the past year, they’d actually told patients something that wasn’t true.

And this is happening despite doctors’ widespread endorsement of a set of guidelines called the Charter on Medical Professionalism, which requires “openness and honesty in physicians’ communication”.

“Our findings raise concerns,” write the study authors, led by Lisa Iezzoni, a physician and professor of medicine at Harvard Medical School, “that some patients might not receive complete and accurate information from their physicians, Continue reading →

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Massachusetts is the leading laboratory for health care reform in the nation, and a hub of medical innovation. From the lab to your doctor’s office, from the broad political stage to the numbers on your scale, we’d like CommonHealth to be your go-to source for news, conversation and smart analysis. Your hosts are Carey Goldberg, former Boston bureau chief of The New York Times, and Rachel Zimmerman, former health and medicine reporter for The Wall Street Journal.

If they’re so effective, why aren’t more women using IUDs and implants? A health clinic in Worcester is getting help to put better birth control front and center — particularly long-acting birth control, in hopes of cutting the high rate of unintended pregnancy.